Turner Cindy A, King Andy J, Tovar Ida, Millar Morgan M, Codden Rachel R, Guo Jia-Wen, Johnson Skyler, Kirchhoff Anne C, Raber Margaret, Sheng Xiaoming, Kepka Deanna, Warner Echo L
Cancer Control and Population Sciences, Huntsman Cancer Institute, 2000 Cir of Hope Dr, Salt Lake City, UT, 84112, United States, 1 8015877000.
College of Nursing, University of Utah, Salt Lake City, UT, United States.
JMIR Cancer. 2025 Jul 29;11:e65887. doi: 10.2196/65887.
Understanding the impact of online cancer misinformation exposure on health outcomes is an area of growing concern, but few methods exist to objectively measure this exposure. The primary aim of this paper is to describe the lessons learned in using web-monitoring software to measure exposure to online cancer misinformation among patients with cancer. These lessons learned emerged from our experience conducting a prospective pilot study from October 2022 to August 2023 wherein we adopted commercially available web-monitoring software to capture cancer-related web content. A total of 56 patients with cancer completed a baseline survey, and 17 of these participants installed web-monitoring software on their personal computer for 30 days and completed a follow-up survey. We use implementation outcomes to describe the feasibility of this methodological approach using lessons learned in 3 topic areas, namely data quality, software implementation, and participant acceptability. We found the web-monitoring data to be appropriate for our research aim to objectively measure cancer misinformation exposure, although compatibility issues with social media websites and mobile devices negatively impacted data quality. A complex installation process negatively impacted implementation and caused an unknown number of participants to drop out after the baseline survey. Among participants who completed the study, reported acceptability of web-monitoring software for research purposes was high, though potentially biased by selective retention. This pilot study testing web-monitoring software for research purposes among patients with cancer demonstrates high acceptability but low feasibility due to implementation barriers. We propose practical solutions to address these barriers and believe the lessons learned here offer a promising foundation for improving methods to objectively measure patient exposure to online cancer information. Future studies should focus on exploring perceptions of web-monitoring among nonparticipants, considering alternative approaches, and expanding web-monitoring to include mobile devices.
了解在线癌症错误信息暴露对健康结果的影响是一个日益受到关注的领域，但客观测量这种暴露的方法却很少。本文的主要目的是描述在使用网络监测软件测量癌症患者在线癌症错误信息暴露方面所学到的经验教训。这些经验教训来自于我们在2022年10月至2023年8月进行的一项前瞻性试点研究中的经验，在该研究中，我们采用了商业可用的网络监测软件来捕捉与癌症相关的网络内容。共有56名癌症患者完成了基线调查，其中17名参与者在其个人电脑上安装了网络监测软件30天，并完成了后续调查。我们使用实施结果，通过在数据质量、软件实施和参与者可接受性这三个主题领域学到的经验教训，来描述这种方法的可行性。我们发现网络监测数据适合我们客观测量癌症错误信息暴露的研究目标，尽管与社交媒体网站和移动设备的兼容性问题对数据质量产生了负面影响。复杂的安装过程对实施产生了负面影响，并导致基线调查后有未知数量的参与者退出。在完成研究的参与者中，报告的网络监测软件用于研究目的的可接受性较高，尽管可能受到选择性保留的影响。这项在癌症患者中测试用于研究目的的网络监测软件的试点研究表明，由于实施障碍，可接受性高但可行性低。我们提出了应对这些障碍的实际解决方案，并相信这里学到的经验教训为改进客观测量患者在线癌症信息暴露的方法提供了一个有前景的基础。未来的研究应专注于探索非参与者对网络监测的看法，考虑替代方法，并将网络监测扩展到包括移动设备。
